Old 05-31-2017, 01:04 PM #1 (permalink)
New Member
 
Join Date: 2015
City: vn
State: vn
Country: bg
Interest: Other
Posts: 48
corwin is on a distinguished road
corwin corwin is offline
New Member
Join Date: 2015
City: vn
State: vn
Country: bg
Interest: Other
Posts: 48
corwin is on a distinguished road
Default update

Hi, I just want to post.
Yesterday I come back after check up with emg specialist.
So sumarry:
- 2,5 years with symptoms.
-Brisk reflex overall
-stiffnes in libs( after I take prednisone it`s gone, after stoping the steroids it`s back)
-symmetrical muscle atrophy in hads and wrst
-summetrical tongue atrophy with some pop rock rile fasciculations and very sharp burning pain
-crisis in the night when i cannot breath and all muscles lose strenght for 2-3 hours,
-my throat is closing i cannot move
-swelling of hands and afther that they atrophy very fast

so everything is getting slightly worse.

I have very heavy hands atrophy very symetrical and not in split hands way, but all the muscles.
Hands are not weak, fine movements ok, but losing muscle mass.
No sensory deficit albeit some butning and little pain

Thongue atrophy - very strange almost tripple furrowed with severe burning and pain.
Where is the pain there is the atrophy. strong and fleixble, fasciculation - occasional, i feel them. Atrophy is getting slightly worse - now the tongue is 1/2 from the size before 2,5 years.
I can move it fast, hold it otside streng for 5 minutes, whistle, push cheeks but losing muscle mass.
I am slurring sometimes, sometimes can speak normally. Can say Peter Piper very good

shortness of breath - with exerton and when I have crisis in the nights

blurry vision

eyes get stopped moving and heavy and when I wake up i almost cannot move them. 5 minutes late there are ok

very heavy and weak wrists. Cannot use ski any more. All muscle gone just skin and bone. This is also very symmetric and in both sides equal

ankes also veak and painfull

very painfull joints, very very much in heels, ancles, knees and fingers.
evelated and almpst gone from prednisone.

weak swallowing.

So when i take prednisone i have 200 %s more energy and all pain are gone. Also little less fasciculation,no tongue pain and super good swallowing.
when i stopped it i am one square one....
Now I am doing hyperbarc chamber but afther 15 session no real inprovement exept in energy levels and strenght

Almost everything is gone worse fot 2.5 years but i am still fully functional with some limitations when i am tired. Everything what is happening is going on symmetrical way.

Also heavy skin problems - skin is peeling around nose and mouth and on the scalp.
The doc says dermatitis, not dermatomyosisit - crk is 190 - which is almost normal.
Liver ensymes slightly eleveated


I make the emg yesterday - she tested 5 muscles.
In all there was 30-50% pollyphasic mups
in one there were big mups and decreased interference pattern.
In all the found fasciculatons.
BUT BUT BUT no fibrilations and psw in no one - even in the most atrophied abductor digity minimi.
I am totally baffed. She was also and say it doesnt look lime mnd but it can be....
Some king of neurological damage which is chronic.
In the farourite hand muscle - firs dorsal interossei is atrophy but no emg changes....

Next week i am going to make 4 cicles of plasmapherresis - we have some proffesor from russia who makes so calles mini plasmapheresis - with nano filter and he used only 5 % from the blood. The professor says it is totally safe and as efficint as original plasmapheresis...

They don`t want to make bypsy because in my country they cannot make good investigation on muscle....

I am pissed of everything, just living day by day i watching how I am getting worse and worse every day....

So if I find it is curable i hope all my posts will help somebody with some sort of same problems and safe presious time in investigation....



Corwin

Last edited by corwin : 05-31-2017 at 01:11 PM
corwin is offline  
Old 06-29-2017, 07:03 AM #2 (permalink)
New Member
 
Join Date: 2015
City: vn
State: vn
Country: bg
Interest: Other
Posts: 48
corwin is on a distinguished road
corwin corwin is offline
New Member
Join Date: 2015
City: vn
State: vn
Country: bg
Interest: Other
Posts: 48
corwin is on a distinguished road
Default Re: update

Hi quick update if somebody follows my case...

So still slowly progressing.
I tried plasmapheresis
It works like wonder for me 10 days without weakness, breath problems and with almost no twitching.
But after 11 day I`m again in bad shape....

So whathever this is it is not stopped.
I have really severe pajn in left thum - almost cannot use it and in the boot heels...

Last visit by EMG neuromuscular doc. Makes 1,5 hours emg only in 9 muscles and found...........nothing.... just some nerve root damage in legs - prolonged f wave... No denervation, no reinervation.... some abnormalities but no ALS. not a single fibrilation or PSW
SHe told me she don`t have a clue what is causing my problems nut is shere it is not als, or mnd....

So back to the beginning...

Found a good reumatolog and he will try with muscle skin biopsy

I`m so confused and some kind of happy....
corwin is offline  
Old 06-29-2017, 11:01 AM #3 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,439
soonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud of
soonerwife soonerwife is online now
Very Helpful Member
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,439
soonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud ofsoonerwife has much to be proud of
Default Re: update

Great news that you are clear of ALS. Hopefully they will find out what's going on soon. Good luck!
soonerwife is online now  
Thanks from
Clearwater AL (06-29-2017)
Old 07-28-2017, 06:08 PM #4 (permalink)
New Member
 
Join Date: 2015
City: vn
State: vn
Country: bg
Interest: Other
Posts: 48
corwin is on a distinguished road
corwin corwin is offline
New Member
Join Date: 2015
City: vn
State: vn
Country: bg
Interest: Other
Posts: 48
corwin is on a distinguished road
Default some pictures

Hi dear people suffering......
, I post some pictues and update - still declinign....
Now I am desperate.....

Hands are burning both, legs are burning in tibialis anterior...
Very very heavy pain in heels and joints....

Hands are losing muscle mass and burning, tongue is losing muscle mass also burning like demialisation ( i feel butning and itchi pain)

I have tongue fasciculation - I feel them all the time - like pop rock candies and electric zaps

I see some improvement in my condition when I use steroids and ivig or plasmapheresis and decline when use imunostimulants....

When i have pain and stiffnes I know that the next days i will loose muscle mass there....


everything is so symmetrical - atrophy in shoulders, neck, triceps , ferearm, wrist, small hands muscles, quads, feets, and temporal area.

Still can function - whistle, eat, speak, blow baloons, make 5 push ups on fingers, but get tired very easy , winded when speaking, and tiwtching like hell....

Still very fatigued eyes and muscle trembling when exertion and flexing...

DOctors are stumbles, they told me - you have problem, very serious but we don`t know what is.....

Do you know als case with so symetrical presentation with muslce loss but no fine skill lost...

Reflexes stil brisk but no babinski...

the atrophy in hads is very trange it is like ulnar neuropathy but ncs and emg were ok execp some chronik denervation changes in most affected muscle...

No split hand wasting - actuali is oposite - the oposite muscle is more affected - the hypothenar...

The last emg shows prolonged f waves in both legs....

I don`t say I have als just sharing symptoms...

I really hope it is something like GBS or CIDP ...

Greeting

Corwin
Attached Thumbnails
update-20170729_003811.jpg   update-20170729_003809.jpg  

Last edited by GregK : 07-28-2017 at 09:07 PM Reason: Removed tongue pics.
corwin is offline  
Old 07-28-2017, 08:55 PM #5 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 440
Bestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the rough
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 440
Bestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the roughBestfriendstilltheend is a jewel in the rough
Default Re: some pictures

Corwin, you've been on this forum for nearly two years. You have never in that time, stated any ALS symptoms yet you're back again. Why are you on this site? What is it you're looking for?

You need to be on a site related to whatever is going on with you. I'm sorry for your symptoms, but they do not have anything to do with ALS. I wish my husband had a clean EMG, I wish that every time we go back to the doctor, the doctor is not finding ALS in a new area.

Go, live your life and enjoy it. Again, your symptoms have nothing to do with ALS.

Good bye.
Bestfriendstilltheend is offline  
Closed Thread

Tags
atrophy, back, burning, decline, denervation, emg, fasciculation, fasciculations, fingers, flexing, hope, hours, improvement, ivig, mnd, muscle, muscles, night, nose, pain, problem, problems, professor, reflex, steroids, swallowing, symptoms, tongue, tongue atrophy, update, wrist, wrists


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Update jamesburns1 Do I Have ALS? Is This ALS? 4 01-21-2015 02:13 PM
A sad update on my dad NolaJen General Discussion About ALS/MND 11 01-13-2015 12:41 AM
Update FrenchFries Do I Have ALS? Is This ALS? 1 01-03-2015 11:32 PM
Update: Micheline Do I Have ALS? Is This ALS? 61 12-01-2008 09:34 AM
Update update on my hero! dadsgrl4life Current Caregivers (CALS) 7 03-22-2008 12:40 AM


All times are GMT -5. The time now is 03:08 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016